2019 Myotonic Annual Conference September 13-14, 2019 Philadelphia, PA

Jenn Dale, Advisor, Faegre Baker Daniels Consulting Advocacy 101 Jenn Dale, Advisor, Faegre Baker Daniels Consulting

What’s Going on in Washington 3

Three Realities of Washington Today Lots of “new” on Capitol Hill, particularly the House ~100 freshmen members of Congress, including many first-time officeholders. Democrats navigating their version of “Tea Party” challenges. Slow start given government shutdown early in the year. A highly polarized and divisive environment Divided Congress (Democratic House, Republican Senate). Significant discord between the White House and House of Representatives. Energy and resources increasingly focused on the future 23 Democrats currently running for President. Diverse field ranges from former VP and current or former Senators and governors to rank-and-file members of Congress, mayors (big city and small) and first-time candidates.

What Congress is Focused on Right Now Appropriations (spending) bills to keep the government funded after Sept. 30th Nominations, such as judges and department or agency leaders (Senate only). Drug pricing, balance billing and proposals to address costs of healthcare Mueller Report follow-on activities. More hearings, subpoenas and related actions. Possible “I” word activities.

What MDF is Focused on in Washington The Peer Reviewed Medical Research Program (PRMRP) that is part of the Defense Appropriations Bill Newborn Screening – Congress has asked the CDC to review how it can advance education, knowledge, and related outreach activities to foster myotonic screening for newborns Supporting the Newborn Screening Saves Lives Reauthorization Act Funding for medical research and public health policies Patient protections – keeping the ACA intact and preventing any undoing of critical patient protections

Appropriations Hearing April 9, 2019

Department of Defense Congressionally Directed Medical Research Programs (CDMRP) Defense Health Program that invests In High Impact, High Risk, High Gain Research Congress allocates over $1 Billion Annually Has funded over 50 Diseases, Conditions & Areas of Research House Bill Includes Disease Specific Line Item Funding Senate Bill Includes Pool of Funding (PRMRP) & Disease Line Item Funding GOAL: Continue inclusion of DM in the Peer Reviewed Medical Research Program (PRMRP) that is part of the CDMRP

PRMRwhaaat? The PRMRP is essentially just a list of diseases that are eligible for research grants Every year, as part of the Defense Appropriations bill, the Senate releases the list of eligible diseases to apply for PRMRP funding Once the appropriations bill becomes law, then interested parties apply for a research grant It is not guaranteed that each disease will receive funding Peer-reviewers and consumer reviewers are nominated for each eligible research area

PRMRP Fiscal Year 2018 $3.1 MILLION DOLLARS….

Why We Focus on the Senate for PRMRP The PRMRP is a Senate program, therefore only the Senate Defense Appropriations bills contain its funding As legislation is being crafted, members of the Senate Defense Appropriations Committee are given the opportunity to weigh in on PRMRP eligible disease areas Senators Feinstein and Durbin in particular have been incredibly helpful in renewing DM’s PRMRP designation

How YOU can get Involved Call or write your Senator to tell them you support the PRMRP, and specifically DM inclusion in the program. If your Senator is on the list of Defense Appropriations Subcommittee Members, call him or her to thank them for support for DM and the PRMRP.

Senate Defense Appropriations Committee Shelby, (AL) Chair Durbin (IL), Ranking McConnell (KY) Leahy (VT) Alexander (TN) Feinstein (CA) Collins (ME) Murray (WA) Murkowski (AK) Reed (RI) Graham (SC) Tester (MT) Blunt (MO) Udall (NM) Moran (KS) Schatz (HI) Hoeven (ND) Baldwin (WI) Boozman (AR)

Why We Need Advocates Like YOU YOU are the single most important advocate in Washington. Why? YOU vote for or against members of Congress. YOU live nearest to your members of Congress. You see them at the July 4th parade, at town hall meetings, in the grocery store, at their kids’ school, at houses of worship, etc. YOU have a deeply personal, authentic and powerful message that is crafted by your own life experience and needs. YOU have taken time out of your lives to make your voices heard on issues that are important to you.

How to be an Advocate at Home You don’t have to be in Washington to be an advocate – your representatives have offices in your home state too. You can meet with staff in those offices, or correspond via email or phone call with the Washington staff. Remember, you don’t have to be a policy expert. The staff will want you to help them better understand myotonic dystrophy and to hear about your personal experiences with DM Being a successful advocate takes work, just like any relationship. Having a solid foundation is almost always helpful so they understand you and Myotonic Dystrophy BEFORE you come in with a request.

Want to be an A+ Advocate? Seek Opportunities To Develop A Relationship With Member and Their Staff Draft A Letter to The Editor About Our DM Congressional Priorities Invite Family and Friends To Become DM Advocates Stay Connected With MDF For Action Alerts All Year

Do what you can, where you are, with what you have. -Theodore Roosevelt

Thank you. Questions. Contact Kevin Brennan at Kevin. Brennan@faegrebd Thank you! Questions? Contact Kevin Brennan at Kevin.Brennan@faegrebd.com